hear*

"My shadow's the only one that walks beside me" (credit G.D.).
You're not alone, certainly in a small minority but not alone. Reality is perception at a particular moment in time. Point being that perception can and does change with time and therefore so does reality (smart folks once thought the world was flat). Don't try and solidify loneliness or you may inadvertently stick yourself with it longer than would happen.

I am pretty sure that I've a good idea how you feel. You and you alone are the only one that can begin to control the space between your ears. Live to your expectations and no one else's, be as positive as you can. I called a mentor many years ago and asked for advice when I was having to deal with some real idiots. The situation wasn't RA related but the advice was good and fits. He said, "It's like swimming in the ocean. Some days the water is calm and you can get up on top and stroke hard and fast making great distance. Some days it's all you can do to tread water but some days you need to take a deep breath and go under and get out of the chop as long as you can."

I get it. We ALL get it here......and that's why we're here.

I just got back from getting an ultrasound......long story short, the radiologist, when he saw that I have RA, asked me who my rheumatologist is. Turns out he suspects that he himself has RA.....has been in denial.......reluctant to take drugs.......realizes he needs to see a rheumatologist......

My point here is that a doctor opened up to a patient [me] about HIS possible RA. I heard the fear in his voice. And by the end of our conversation, I sensed his relief in being able to talk to someone who understands.

We ALL need to have e-friends who get it, who can commiserate and cite experiences. Because the reality is that no matter how close a spouse or parent or significant other......unless they have it, they never really understand.

I'm glad you found us.

Tell us, are you under the care of a rheumatologist? What drugs are you on? How are you doing now?

Welcome to DS and to our RA forum. But sorry that you, and all of us have to be here. I have found this to be a consistently supportive and helpful forum, with some good people. Despite some recent issues with a change of the format, I know I need support just as much as before things changed.

It is so true that no one can understand like someone who has been here before. I had a cousin with JRA that turned into adult onset RA. She helped me a lot in the beginning, plus she started a local RA group and was part of a group demonstrating joint deformities to med students. She had a LOT of really bad deformities, having gotten RA back in 1954 before there were good meds. That support meant a lot, so I have always tried to help others who are going through this alone.

It is terrifying, but I always urge people to press their doctors for better meds, if the ones they are on aren't working. If possible! I was 7 years into RA before I found a good med combo, and then I had 5 years of 100%. Since then, some big ups and downs.

Anyway, I hope you will tell us a little about your treatment regime and glad to meet you.

Well, let's see if I might understand a bit about how you feel because I know the frustration I feel when people start lecturing me. Most have good intentions. However, I'm fairly amazed how other people assume I know nothing about the disease I have.

Out with friends last weekend, I had the pleasure listening to acquaintances and complete strangers tell me about diets, herbs, cures, mindfulness, drug side effects, acupuncture, positive thinking, exercise, health histories about certain people they knew, philosophy, religions, naturopaths current authors; the list was endless. It was, as if, they just thought it would never occur to me to speak with my doctor, follow a treatment plan, read informative books, talk with supportive family and friends, or do any of the above. Hmmm...

Evidently, because I was on crutches, some thought it was an open invitation to grandstand and educate me, because after all, what do I know, let alone all the Medical Specialists that have worked with me for years?

In the past, initially, I would listen to the "Shoulds." Now, not so much. I either shut the verbiage down quickly, not rudely, or take time to educate people, even when it's to no avail.

It's all rather, silly, and, yet, I still manage to have fun and not feel all alone. I hope this group is a beginning to help you not feel so alone....

I think I've come up with a good response to those people who start "educating" me:

[Smile straight at them and say:] "What is it about me that makes you think I don't already know everything credible about my disease and treatment options? "

And then, if the spirit moves you, add:

"I understand you're trying to be helpful, but frankly, your information is tried and true hogwash."

try this: don't hurt yourself unintentionally :). talk to folks about RA who will not tell you what to do along the lines of denying your reality. (this mode works well for online also). for folks that have didactic preaching telling types of mode, disengage if you can? finding true community takes time. during that time do not beat your head on the fence with folks and their old wives tales and narcissism and intentionally placed incomprehension and suggestions...

it's a waste of your time to educate and not really worth it. a friend or family member, or even an online person that wants to get your reality will learn. you know the way you research a malady that your buddy has that you do not have? it takes time to get there. the spoon theory is important because a 20 something probably wrote it initially. you are a 20 something. Most peers in your group do not have a malady or chronic condition I would guess, right? so you are unique. what makes each one of them unique? turn the spotlight around to them if you can until you find your true community for ra. I have an in person ra support group in my local area. I found a best bud there and she is actually more valuable to me than online support groups because we share our crap in person and we can answer each other's sentences about ra. we take the support we need, from each other, and I generally operate on the principle that I will not get it elsewhere. check meet up in your area for auto immune in person support groups also. there might be one.

hang in there.

glad you are here.

depot

Thanks for all the responses! Unfortunately I don't have health insurance at the moment. I only take 10mg of prednisone daily from the last time I did see my rheumatologist. Hoping that I can get things turned around by the beginning of the year. Is anybody on disablilty as a result of their RA? I'm finding it increasingly harder to get through days at work.

Also, is there a way to look up local support groups on this site?

Try ra warrior

And try meet up in your area

For meet.up it helps to broaden to auto immune

Or start one youself

In person is wicked helpful

RA is the Roger dangeffieldn of diseases: It get no respect! I tried to campaign for a name change as other diseases have done, but no support to do so. So we are stuck with heaving to hear people say: "Oh yeah, my pinky finger hurst when it rains." " Or, "Have you tried the no nightshade diet?"

I have been on disability since 1999. I was forced into retirement by my school district, although I am still on CPP disability till I turn 65. I was turned down the first time, but that was because the doctor messed up my forms.

If you are able to get by on only 10 mg of prednisone you would probably be greatly helped by a DMARD or biologic. Prednisone at 10 mg will stop your adrenal gland from functioning, and you may never be able to go off of it. That is why it is essential you somehow get a rheumatologist to start you on the drugs that stop the disease, not just cover it up. That is all prednisone does -it cuts down inflammation, so you don't feel it as much, but the joint damage continues. And organ damage, etc, etc.

Welcome to the board, Now that you are here you won't have to feel alone anymore.. your right about people not understanding r.a. I just had a woman that has osteo ask me what the difference is between the two. Once I explained it to her she had to pick her chin up off the floor... Now she understands why I do not do all of the exercises that are done in class. I have joined a strength and stretch class 3 times a week and it seems to have help some. glad I joined.

You might try calling the largest hospital in your area, ask to speak with the staff social worker. They know about all the resources and contacts for groups.

I feel the same exact way.... I was diagnosed when i was 17 and Im 21 now. No one understands that its a disease that goes far behind arthritis since it is an auto-immune disease. I never feel good but I hate to complain so I don't really disclose much to anyone but maybe my Mom anymore. I've started seeking out support groups because I feel very alone right now as well and I'm getting very depressed about it. Hope that you are able to find a little bit of support and hope in this group..